Anyone with two stomas

I have two only trouble I have is with the ileostomy the other stoma is great only leaks every few days can change bag in 10 minutes I had a reversal only lasted a month surgeon messed me up

Hi Lisa I’ve just come across your post, hope your doing well. My Dad is going into have a pelvic exenteration next month which will result in him having to have 2 stomas. I’m just wondering how you coped after the operation and living with 2 stomas can you do all your normal things you did before and can you wear your normal clothes? Thanks 

Hi Dankel82

I hope you get a specific reply from Lisa soon.

I had a transanal APR so my bum is intact but I currently have two stomas. I had an ileostomy on 12 June but because the join in my bowel leaked I had to have emergency surgery 5 days later and an end colostomy was formed, leaving me temporarily with two stomas.

The one for the ileostomy is active. I use a Coloplast Sensura Mio convex bag and touch wood no leaks at all in 2 months. The stoma nurses at the hospital have been brilliant and are a fount of knowledge. You can also speak to advisers at whichever company provides the stoma bags and supplies. I use Chartercare but there are quite a few others. 

My colostomy stoma is inactive at the moment until I have surgery to reverse the ileostomy which I’ve been told will be in a month’s time. At first the stoma nurse gave me a small closed stoma bag to use and it was a nuisance having two bags on my tummy. But I was still swollen from the two operations within a week.  To start with I wore yoga pants and elastic waisted trousers and skirts. I wore my slightly longer tops outside of my trousers and it looked fine. My normal trousers were mostly too low waisted and the waistband sat on top of the stomas which is no good. But as my stomach has got flatter (I’ve been doing the post-op Core 4 exercises pretty regularly) I’m finding I can wear more of my normal clothes. Today I put on an old pair of jeans which have quite a lot of stretch in them and are just high enough to be over the stomas. I find that my tummy doesn’t look obviously bulky and most people don’t give me a second glance! I’ve also worn my normal sports swimming costume at the pool and although if you looked carefully you can see the bags I don’t care enough what people might think! You can wear a patterned or ruched costume but I  haven’t found one I like that’s not frumpy.  

After the first couple of weeks the stoma that is for the colostomy (which is inactive and called a mucous fistula) was so quiet that I just use a flat bag/cap over it which is like a large sticking plaster and more discreet. 

FYI I also have a friend who had a complete exenteration a couple of years ago. She likes to wear trousers and long tops but always looks great. Her recovery was long but she is back to her usual lifestyle now and goes away on holidays  

sorry no experience from a male point of view. 

Good Luck to your dad!  

Camelializ

Hi Camelializ

Thank you for your reply, seems like you’ve been through a lot with 2 surgeries and 2 stomas but you’ve come out fighting, it’s such a horrible and cruel disease that people have to go through, thanks so much for all your info it has helped but I’m just so worried for my Dad he’s so active and fit plays golf at least 3 times a week and doesn’t like just sitting around and it worries me he won’t be able to do all these things with 2 bags and won’t be able to wear his clothes. My Dad’s is rectal cancer but they say the only cure is a pelvic exenteration for it. I’ve read stories about people having one stoma for rectal cancer but not really two. Am glad your doing well and did you say your getting s reversal of one of them to? Thanks for letting me know about your friend to as don’t think there’s many people on here that have two stomas. Thanks again and best wishes. 

Hi Dankel82

I guess if your dad's rectal cancer has spread to other organs in the pelvis that's the reason for the exenteration.  I too had rectal cancer which recurred, but luckily it hasn't spread outside of the bowel (we hope!!). I think your dad will have one stoma for the bowel and one for urine (urostomy).

Try to find out as much as you can in advance, as all the hints and tips really helped me.  There are lots of leaflets and I'm sure there is a Macmillan leaflet on Pelvic Exenteration.  But as others will say, DO NOT GOOGLE, as you'll find scary horror stories.  You can get great information and support here.

I would say that the fact that your dad is active and playing lots of golf will stand him in good stead.  Try to get him as fit as possible before surgery and that will really help.  I did Pilates after my first resection which was in Nov 16 and I think it has helped a lot with me regaining my core strength.

Yes, I think he will have tough times ahead, but if they get rid of all the cancer he may well be back on the golf course in due course.  But it will not be for some time I'm afraid.

Hope others join in the conversation.  I see you posted on a separate thread so that may be better as sometimes conversations can get lost in old threads.

Hi Camelializ

thanks for your reply yeah it’s good on here for information.  Yeah I think it’s spread into his prostate a bit but I’ve not heard of many other stories like my Dad’s. Are you still having treatment for yours or has the operation got rid of the tumour, lucky that it hasn’t spread out of bowel to. I seem to google everything and I wish I wouldn’t as it does scare me. There doesn’t seem to be much information on pelvic exenteration on google really which worries me to but I will look out for leaflets thanks. Good you got back to doing Pilates that would of helped you build your strength up to. Yeah hopefully my Dad will get back to his golf. Does your stoma play up at all or is it quite good with no leaks. Thanks again for your messsge and best wishes to you. 

Hi dankel82 I’m a bit late on this but just wanted to say I’m living with two stomas .. an ileostomy and urostomy and I wanted to reassure you that life can be just as fulfilling with two stomas.  It takes time of course to recover from surgery but a year on and I have been to France and Spain., I’ve been swimming and am back running regularly.. if you have any specific questions just let me know.

Clare xx

Hi Clare 

Thanks so much for getting back to me I really do appreciate it as it’s so nice to hear how other people are coping. I have replied but I’m not sure how to use this site probably so not sure if you even got it.

Wow you seem to be doing really well it’s lovely to hear  and makes me feel better about my Dad having 2 stomas and that you can still be active and go away on holidays. I’m worried about it so much and how it will effect my Dad and the operation aswell.

Did you have to change Your clothes as in buy new ones or could you just wear your normal ones. How long ago did you have the operation and have you had any problems with your stomas since surgery? Sorry for all the questions. 

Thanks 

Dankel82

1. Hi, I see this was posted two years ago, but I now have two stomas, going to ask you the same question, how are you getting on, what pitfalls did you come accross. 
2. Dean

Hi Dean

My Dad had a pelvic exenteration only last month, he’s 6 weeks post op now and don’t get me wrong the first 5 weeks were not good at all, he was very very down over the operation he had no strength and was so weak he couldn’t eat - it was horrible to watch him be like from being such an active man. Each day tho I can see him getting stronger, he’s eating more, and learning to cope with 2 bags, he still had days where he’s fed up tho aswell. He has had a few leaks which do set you back - there seems to be an awful lot you can use for the bags some stuff seems quite technical aswell. He has to use the night drain which is a pain at night as it restricts your portion of sleep and you can’t get comfy. It’s a shame they don’t explain all this and how you will be before you go ahead with this massive operation. How are you getting on with yours? Are you coping ok? 

Danni